The following 4 users say "thanks"

Rose, I'm so glad to hear that you got some promising news! I'm just sorry you weren't given the good with the bad, and you had to worry over the disappointing results of the MRI. This must have been such a relief for you both. thank you for all the updates. Keeping those prayers coming.

Rose, this is so much better. I am so happy to hear this. We will just all keep praying and hoping for Jim. Just think it has almost been a year and that is so wonderful from where he started. I know the good care and research that the two of you have done and the questions you have asked your Doctors has helped immensely. I hope the three of you have the most wonderful Christmas ever.

Radiation: Day One

((((((Hugs to All)))))) ~

Thank you all so much for your continuing love, prayers, and support. I can't convey to you how much we appreciate you.

Jim had his first treatment today, or as he refers to it, "zapping." The mask on his face is somehow attached to the table upon which he lays, and then each temple is radiated (?) or zapped for 30 seconds. Dr. D doesn't perform the procedure; Jim had 3 technicians working with him, all very kind and caring.

Last night, his headache was worse, and it continued this morning, even after Tylenol. After he got home from his treatment today, Jim said he had a headache, then later, his ears, jaw, and neck hurt. He's taking Regular Strength Tylenol, so I increased his dosage from 2 to 3 caplets. He was able to sleep for a few hours, and when he woke up, he still had the headache, but the other pain subsided.

John visited to turn Jon, just as Jim woke up, and he is, of course, concerned about Jim. He told Jim that he is available tomorrow to transport Jim to/from his treatment. I think that's wise, since Jim does have these side effects. I would feel better, if Jim wasn't driving. John is such a blessing.

Jim will ask tomorrow whether there is anything other than Tylenol that he can do to reduce the discomfort. We're hoping that this won't happen every time, but we won't know, unless he asks.

Jim's sense of humor is still in tact. Tonight he said to me, "Honey, you won't need to turn the lights on the stairs during the wee hours, when you're taking care of Jon, and I'm sleeping. After a few more of these treatments, I'll be glowing in the dark. My head will be your night light."

This is how we always diffuse stress and fear. We make silly jokes.

Even with as bad as he was feeling, Jim still insisted that he wanted to help me make lunch. I had to shuffle him back to his nest and tell him to rest and relax a few times. Finally, I said, "I'm your caregiver. And I say, 'Sit! Stay!'"

He worries about me. Jim would move mountains for me and Jon. He is our rock, our compass, our protector. And our love for him is boundless.

So, Day One is over. We move forward.

Thank you again for your prayers. Please know that you are all in our prayers too.

Love & Light,

Rose

Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

I'm sorry Jim is in pain but I pray the pain is a sign that the unwanted cells are dying. Your joke made me want to say to Jim lovingly "Hey, maybe when this is over you'll be able to levitate stuff with your mind!" LOL. Always good to have a sense of humor. Good luck tomorrow.

Radiation: Day Two

((((((Hugs to All)))))) ~

The headache continues, although Jim says that it is tolerable.

About 20 minutes after John dropped off Jim at the medical offices, Jim was done! It takes longer to put on and take off the mask than the actual procedure. As soon as Jim got home, he took 2 Tylenol with the hope of warding off the ear and jaw pain. Jim said that Dr. D told him that he would experience fatigue after the treatments, and he is. Thankfully, he's been sleeping and woke up a with no headache.

This is a trauma to his neurological system, if not directly to his brain. So my response is the same as it would be to any brain trauma ~ minimal stimulation, quiet, peaceful surroundings, lights out, toasty warm in bed, resting and sleeping. He overdid it yesterday. Today was different.

Jim saw a reflection of him wearing the mask, and he quipped to the technicians, "All I need is a chain saw, and I can be in the movies!" (Referring to the villain in the chain saw massacre movies! Yikes!)

The technicians told Jim that he will be seeing Dr. D next week. We don't know when or how at this point, but I'm sure that she's keeping close track of his treatments. I think images are being taken with each treatment, from what Jim has described. That makes sense, because they need to know whether it's working to determine the length of treatment and dose of zapping.

I made a hardy breakfast for us before Jim left for his treatment, and he said his appetite had waned, but he ate most of it. For dinner, we're having steamed green beans and carrots, mashed potatoes, mushroom gravy, and Quorn. Comfort food for Jim.

We've been through so much this year, and compared to the early days, particularly the extreme RA flare after Opdivo, this radiation treatment seems (at least for now) to be easier than anything he's endured.

He has the weekend to rest, before round 3.

We continue to be positive and hopeful and to rely on our faith and our commitment to fight this battle together.

To my sons and my husband, I say, "It's an honor and a blessing to serve you." Their courage is breathtaking. They give me strength.

Thank you all so much for your love, prayers and support, as always. We are so grateful to you.

Love & Light,

Rose

Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

Although Tylenol abated the headache last night for a few hours, it returned and persists. This morning, Jim was nauseous and couldn't find his Zofran. He only takes that when it is absolutely necessary. Once he found his Zofran, his nausea calmed, and he was able to eat a plain omelet with a tablespoon of leftover mashed potatoes and two small slices of toast. It's a very good thing that he weighs 170 lbs right now, if this is going to be a pattern.

Dr. D and the technicians have told Jim that he will experience fatigue, and is he ever! He is so tired now that he's sleeping several hours at a time, before he wakes to go to the bathroom. However this morning, he said that he got up every hour to go to the bathroom, while I was on my sleep shift. I attribute that to him not taking his Saw Palmetto (for prostate health).

With all of this sleeping, Jim isn't getting enough fluids or nutrition. So, we have to address that somehow. I'll be encouraging him to drink an Orgain shake later this evening.

This morning, Jim told me that he feels worse right now than he has throughout the year. I reminded him of his 6 week Opdivo-induced RA flare in April and his pneumonia (hospitalization) in August. He agreed that those were worse, but he still feels lousy.

Unquestionably, Jim's body has taken a beating this year. It's remarkable that he is as strong as he is, but he is determined and unbelievably courageous.

Right now, my prayers are focused on this treatment being short with perfect efficacy, because I don't want Jim to continue to suffer with more treatments. As I said to Jim today, "This is what we're doing to prevent cancer from invading your brain. We have to believe that this is worth it, and that will keep us strong."

Thank you all so much for your continuing prayers, support and love for our family.

Love & Light,

Rose

Mom to Jon, 48, (seizure disorder; Gtube; trache; colostomy; osteoporosis; hypothyroid; enlarged prostate; lymphedema, assorted mysteries) and Michael, 32, (intractable seizures; Gtube), who were born with an undiagnosed progressive neuromuscular disease and courageous spirits. Our Angel Michael received his wings in 2003 and now resides in Heaven. Our Angel Jon lives at home with me and Jim, the world's most wonderful dad.

The following 3 users say "thanks"

Rose, Please know that the effects of rads are cumulative, and continue for some time after the last treatment. Encourage Jim to communicate with his rads onco, so appropriate prescriptions may be given. You also may want to check into some stronger cannabis products, especially ones that address nausea and appetite as well. I'm not sure the CBD oil will manage this stuff, and he may need a little THC.

Did the doc or technicians give any instructions for protecting the skin that is being exposed to the rads? It can burn as well, so be sure that is being addressed as needed.

So sorry you are going through this. Many good thoughts for a successful week.

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